All three are patients struggling with chronic pain, but what they are describing is not physical agony but a war inside the medical community that is threatening their access to painkillers — and, by extension, their work, their relationships, and their sanity.

Two years after the United States saw a record 27,000 deaths involving prescription opioid medications and heroin, doctors and regulators are sharply restricting access to drugs like Oxycontin and Vicodin. But as the pendulum swings in the other direction, many patients who genuinely need drugs to manage their pain say they are being left behind.

Doctors can’t agree on how to help them.

“There’s a civil war in the pain community,” said Dr. Daniel B. Carr, president of the American Academy of Pain Medicine. “One group believes the primary goal of pain treatment is curtailing opioid prescribing. The other group looks at the disability, the human suffering, the expense of chronic pain.”

Pain specialists say there is little civil about this war.

“There’s almost a McCarthyism on this, that’s silencing so many people who are simply scared,” said Dr. Sean Mackey, who oversees Stanford University’s pain management program.

“The thing is, we all want black and white. We don’t do well with nuance. And this is an incredibly nuanced issue.”

Nuance does not matter to people like Tausig, 43, who has been unable to work or socialize since 2008, when the last of his five spinal reconstruction surgeries left him in constant pain.

He last got a taste of life without opioids a few years ago, when his pharmacy’s corporate parent imposed opioid-distribution limits, forcing him to find a new one.

“Those three days were among the worst of my life,” he said. “I wandered the house at night, legs shaking like a whirling mass of putty, sleepless and without respite from the pain.”

Now, with regulators and health industry leaders continuing to bear down on opioids, and the arrival of a new president whose statements indicate that he might further restrict opioid distribution, Tausig’s worries have deepened.

“It’s put the fear of God in me.”

Michael Tausig has been unable to work or socialize since 2008, when the last of his five spinal reconstruction surgeries left him in constant pain.Elizabeth D. Herman for STAT

The medical community’s battle over painkillers burst out into the open in late 2015, when the New England Journal of Medicine published a commentary in which two doctors argued that chronic pain patients should focus not on reducing the intensity of their pain, but on their emotional reactions to it.

The authors, Dr. Jane C. Ballantyne, the president of Physicians for Responsible Opioid Prescribing, and Dr. Mark D. Sullivan, argued patients should pursue “coping and acceptance strategies that primarily reduce the suffering associated with pain and only secondarily reduce pain intensity.”

The pair argued that patients who mainly focus on pain intensity tend to escalate their doses of opioids and worsen their quality of life.

On NEJM’s website, the comments section devolved to a flame war more suited to YouTube than the staid pages of the nation’s top medical journal, with some accusing the authors of a lack of compassion, and others lauding them for a sane approach to public health and addiction prevention.

But the comments also laid bare a fundamental problem in the debate over opioid treatments: Neither side has much evidence about the benefits or consequences of long-term use because almost no such studies exist.

A few studies have identified a litany of side effects beyond addiction. One survey, by palliative care doctors Mellar P. Davis and Zankhana Mehta, pointed to symptoms including increased risk of depression, anxiety, cognitive impairment, and sleep apnea, among other issues. Patients with lung disease were also more likely to die when their treatment included opioids, according to the survey’s authors, who practice at Geisinger Health System.

Stanford’s Mackey said those risks are important to recognize. But, he said, nearly 15,000 people die a year from anti-inflammatory medications like ibuprofen. “People aren’t talking about that,” he said.

On a Monday morning last month, Mackey entered an exam room to greet one of his patients who uses opioids: an 81-year-old physician with a bad back.

The doctor, who agreed to be interviewed on condition of anonymity, said he’d routinely cycled to work until relatively recently, when a degenerative spinal condition worsened. Surgery in October failed to help, and now, he told Mackey, he can only get out of bed if he takes five opioid pills at dawn and sleeps another half-hour before rising.

The doctor wanted to find a way to address his back problem without the painkillers, which, he said, cloud his thinking.

Mackey spent nearly 30 minutes with him, talking about scans, symptoms, and previous treatments. He planned a follow-up consult in January, when another set of test results would arrive.

“Do you get any sense from him of drug-seeking behavior?” he asked. “Is he selling this stuff on the street or trying to score some synthetic fentanyl or heroin? No. All he wants to do is be more functional so he can see patients and be relevant and have a life.”

Mackey also wasn’t sure the opioids were causing the cloudiness. The patient’s cognitive issues could be the result of non-opioid medications he takes before sleeping, so dialing down the opioids without first exploring other options might harm him more. Without them, his pain would be so severe he would be relegated to bed.

“If you’re 81 and you stop getting out of bed, it’s a slippery slope,” he said.

Mackey, a past president of the American Academy of Pain Medicine, has built Stanford’s pain center into one of the nation’s most comprehensive and well-funded pain research operations. But he said doctors being trained there have grown increasingly fearful about prescribing opioids.

“In many cases that can be healthy, but I’d like to see a thoughtful, balanced approach,” he said. “Opioids are a tool — they’re more often a fourth- or fifth-line option for me.”

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Mackey recalled the case of a patient who had crushed his foot in an accident and undergone 10 surgeries that failed to diminish his “burning, terrible pain.” The patient now relies on opioids.

“People will say, ‘This guy’s on way, way too much opioid medication, you have to take him off,’” Mackey said. “But guess what: He gets up every morning and goes to work and does his job, and he’s been on the same regimen for years and years and tried everything else first.”

Even some of Mackey’s colleagues have issues with that kind of thinking.

Lembke believes that long-term opioid use can cause patients to perceive pain even after the original cause of pain has cleared. Some patients, she said, find themselves free of pain only once they have endured the often agonizing effects of opioid withdrawal.

“That’s what we’re seeing again and again,” she said.

Lembke believes people with chronic pain who have taken opioids daily for long periods may never be able to break their dependence on the drugs, and may need permanent doses of medications like Suboxone, which is commonly given to people with opioid addictions.

But chronic pain patients who have not yet started on opioids, she said, should only take them intermittently — “like every three days or so” — to avoid addiction.

The American culture has grown too intolerant of pain, Lembke said.

“Whether it’s surgery or women going into childbirth, there’s an alarmist reaction to pain, and it’s contagious and makes more people anxious, which makes the pain worse,” she said. “We’re terrified to experience pain.”

Mackey has built Stanford’s pain center into one of the nation’s most comprehensive and well-funded pain research operations.Elizabeth D. Herman for STAT

Those who experience chronic pain say these views embolden clinicians, pharmacists, and others to treat them like addicts and criminals.

Hemberry, a 36-year-old multimedia specialist in Leavenworth, Wash., suffers from a connective-tissue disorder called Ehlers-Danlos syndrome and trigeminal neuralgia, an often-excruciating nerve condition for which she occasionally takes opioids.

She heard Lembke interviewed on NPR recently and was bereft. “Every pain patient is now an addict and a failure,” Hemberry said.

Last March, the Centers for Disease Control and Prevention issued guidelines for opioid prescriptions. Those guidelines focused on addiction prevention, opioid trafficking, and medication diversion, and included stern cautions against using the drugs for chronic pain.

To Hemberry, the guidelines seemed reasonable. “But many doctors and administrators have taken a hard-line ‘no opiate’ stance,” she said, and go to absurd lengths to enforce it.

“What people forget is, those who end up on opioid pain management have usually tried everything else unsuccessfully.”

Thomas P. Yacoe, who suffers from chronic migraines

Earlier this winter, Hemberry recalled, she went to the emergency room with a migraine headache, a frequent symptom of her medical conditions. She was seeking a saline drip — one of the few treatments that has helped her pain — and said she wasn’t seeking opioids.

The nursing staff nonetheless grilled her on her medications and chided her for taking too many pills, even though her daily medications are non-narcotic. She turned her head at one point and started sobbing.

Others report a similar lack of empathy.

“What people forget is, those who end up on opioid pain management have usually tried everything else unsuccessfully,” said Yacoe, 61, who suffers from chronic migraines. “I stayed away from opioids for decades. It was really and truly a last resort.”

A patient room at the Stanford University Center for Back Pain.Elizabeth D. Herman for STAT

Some clinicians trace the early roots of the opioid crisis not to the pharmaceutical industry’s marketing of controlled-release morphine pills, but to a 1986 study of 38 non-cancer patients performed by palliative care doctors at Memorial Sloan Kettering Cancer Center.

Most were treated with oxycodone, methadone, or levorphanol in small daily doses — less than half the surgeon general’s current recommended starting dose — and 24 reported acceptable or adequate pain relief, while two patients developed “management” problems with the drugs. (Both had histories of substance abuse.)

According to Carr, of the American Academy of Pain Medicine, the conservative opioid treatment approach used in the study, and the modest benefits reported, reflect the current practices and expectations of many doctors.

But a growing number, he said, are being pressured into a zero-tolerance policy.

“Because if one isn’t anti-opioid enough, there’ll be protests,” said Carr, who is also founding director of Tufts University’s Pain Research, Education, and Policy Program.

Other experts note that, as opioid restrictions tighten, the medical system and insurance industry have done little to support opioid-withdrawal efforts, help more physicians learn how to help patients manage pain, or enable access to alternative therapies.

In some cases, patients seeking to treat their pain have turned to street drugs like heroin or synthetic fentanyl, while others have instead chosen suicide. (In one high-profile case recently, a man who committed suicide left behind notes saying he could find no help for his chronic pain; at least two of the roughly 20 patients interviewed for this article said they had considered suicide because of their pain.)

Everyone wants the number of opioid overdoses to fall. But patients like Tausig don’t want to be made to suffer.

Tausig, a single father of two teens, said that every month he needs to fill a prescription, he’s fearful it will be denied.

Whenever he thinks he might meet with a new pharmacist or clinician, he dresses neatly to hide his tattoos. He said he thinks they can cause people to rush to judgment or even stigmatize him as an addict.

“You’ve got the wars on the medical side, but then you’ve got the governmental people stepping in, who have no idea,” Tausig said. “All they know is drugs: bad.

“They don’t see a struggling single dad in the most expensive place in the US who’s just trying to get through the day.”

About the Author

Bob Tedeschi covers the patient experience for STAT, while also focusing on end-of-life issues. He previously covered technology, business, personal finance and a range of other topics for The New York Times.

I don’t take opioids because they don’t help and they make me sick. But if I could have a pain free day and function, I certainly would. How dare a physician say that patients need to get used to the pain. Do they? These lucky individuals who have fellow Doctors at the ready while us commoners wait by the phone just to hear back from a PA? I’ve witnessed the manner in which fellow chronic pain sufferers are treated. Like criminals. And it’s shameful. While you Doctors are busy forming into groups and corporations to further restrict our access. Want to see another Doctor because you have no rapport with your present one? Sorry. If they are in the same group (club) you can’t. Some of these Doctors should be more concerned about prescribing off-label medications intended for one purpose and being substituted for pain. Some of the side effects are staggering. I hope chronic pain sufferers everywhere find relief and actually get to experience a life. Somehow I doubt the Doctors in the article will worry about that at the club or having their pre-dinner martini. To the sufferers, bless you all.

I have been a chronic pain patient for a decade since slipping off the top of 3 concrete steps, damaging 3 veterbrae in my neck.In the beginning, it was a long trial and error tofind out if nsaid would handle my pain, then up, teeny dosages at a time until finally arriving at 5-325 oxycodone & acetamenafen. I have been on this, the lowest dosage manufactured all this time. Recently my husband and I had tomove, due to a collapsed ceiling in our apartment. I could feel the bending, packing, etc. taking its toll, and now, months later, I feel I require a stronger dosage, as I can no longer sleep through the night; I am awakened with pain. The doctor at my hospital pain management clinic is new, young; seems to have an unwavering stubborness, making it difficult, upsetting, extremely time-consuming, worrisome that he does NOT understand chronic pain, refusing to listen to many of his new patients (I heard many complaining). This could be result of stronger guidelines set by the hospital; or that the Fla Attorney General has made abuse of prescription pain meds platform”, saying that “13 people die every day from prescription painkiller abuse”. I don’t know if these numbers are correct – seems impossible. But, our civilization has so many dangers, diseases, crimes, etc., one can be killed these days many different ways. Most of us want a long, healthy, pain-free life; those who don’t are smoking, drinking or otherwise committing suicides. Rather than policing pain patients or chronic pain medications, counseling for depression and substance abuse might b a more effective option.

No physician would deny a diabetic the medication upon which they have become dependent, NOT addicted. Why does the government claim to be so concerned about people becoming “addicted” when without pain medication they are actually becoming incapacitated or even committing suicide? Is it because it is more cost-effective for the government, not to mention the insurance companies, if we die and, in Dickens’ words, “reduce the surplus population?” It is certainly much easier to pressure the weak and helpless who have legitimate needs for pain medication than to do address the drug cartels who provide illegal “street” drugs. These are the people who are addicted and are overdosing. Legitimate chronic pain patients are closely monitored. If their pain medication runs out before their next appointment, they must do without. There are no refills. It is also in the government’s interest to conjure up a so-called “epidemic” and then pretend to be doing something about it by targeting legitimate chronic pain patients. The government doesn’t want to give up its kickbacks, but also appear to the public as if they’re actually doing something to address the “problem” that they themselves have created. However, all they are really doing is increasing the needless suffering of those who have enough problems just getting through the day, let alone protesting their discrimination. If it wasn’t so sad, it would be a joke.

The sloppy language being thrown around about opioids and addiction is deadly to our national and mutual individual interests.

We need to somehow begin to stop the rote conflating of prescribed medications with the very real problem of unprescribed adulterated drugs being made, held, transported and used in insanitary conditions by unlicensed persons outside the context of the physician-patient relationship.

This includes calling out the illiterate and rhetorical sloth now unchallenged in the LEO community from thoughtful professionals who are angry about the disruption to their budgets, political realities and the very dangerous risks to their general operations caused by the serial importation, trafficking and use of adulterated unprescribed drugs used without medical supervision. They are not physicians. Yet to hear their frustration and sloppy rhetoric, they are a threat to medicine, medical practice, and the mutual civil society in which all must live. They may not mean their overreach. But overreach it is, and the medical and the public they serve had better get their act together and push back to enforce proper boundaries or the human suffering and professional problems of the physician community will only get worse, and I fear, much much worse.

The LEO’s may be legitimately frustrated, but they miss the fact the demand/user arises from a sophisticated medical problem they are incapable of solving by LEO methods. Nor are they thinking about the awful personal price that may be paid by themselves or their loved ones down the road should they have atypical or non-conformant need of pain medication, and cannot get it because the physician community has been criminalized and the rightful practice of medicine and primacy of the physician/patient relationship has been usurped by prohibitionist overreach and bureaucratic usurpation and subjugation of the citizen patient and the attending physician of their choosing.

Adulterated unprescribed drugs are the problem. Adulterated drugs and use of unprescribed drugs is ALREADY illegal independent of the problem of addiction.

But the rhetoric is terribly conflated. This does not serve the public interest. LEO’s are confound by the magnitude of civil and criminal crises the implicitly medical dynamic adds to the demand side of the problem.

Legalization is no more an answer than “illegalization.” Both will and must fail as they are not relevant to the underlying drivers. We need better, smarter regulation of the user dynamics involved and to liberate the LEO community from policing the medical dynamic that drives the demand side of the most pernicious use patterns that frustrate their best efforts.

There is plenty of crime to police. We need to separate the medical and the clinical from LEO responsibilities. We need to liberate our physicians to attend the citizen patients who suffer these addictions and abuse patterns and let the physician manage the realities of the patient cravings/need for “clean” drugs prescribed and used under medical supervision.

At some point we need to “Let Darwin Be Darwin.”

Again, preserving and giving primacy to the sanctity of the physician-patient relationship holds the answer that best protects the interests of society and the individual.

Only within the dynamic of the citizen patient and the attending physician of their choosing is there any hope to more effectively manage and better protect the greater society from the morbidity of its individuals while preserving the citizen’s and the physician’s right to life, liberty and the pursuit of happiness.

Not only are those rights inalienable, they are mutual; rights that we all share equally. Let our wisdom and our policy be better informed by the mutual respect such maturity demands, and let us stop identifying as morality that which is actually a dangerous immaturity and lack of respect for the principles of liberty and civil decency our nation was founded upon.

The problem of unprescribed and adulterated drug distribution and use is free-standing and should be conflated or used as justification to interfere with what should be a protected primacy of the physician-patient relationship mutually enjoyed by all citizens and the attending physicians of their choosing.

Lose this primacy to sloppy puritanism and overreaching bureaucratic usurpation and we lose a precious bedrock of civility in our society.

We don’t want LEO’s practicing medicine. It’s a terrible burden to abandon them into when drug addiction involved. There is no way their profession is well-served by this mission. It will only the quality of life for themselves and their family, and increase their risk of advanced personal morbidity or future injury, debilitation or death by violent assault.

Darwin will have his day. The moral arguments are not what the prohibitionists self-dealing politicians would have us believe.

Mr.Hawks,,I wrote u a reply before but it disappeared??,,Sir your words explaining this whole mess,willfully caused by arrogant&ignorgant government official and some doc’s really elegantly TELL THE TRUTH,,u mentioned this is the biggest civil right issue of our time,,and I agree,,thus,,I have asked thee ACLU for help,,,and please Sir,,your words,,and your ability,along w/Mr.Lawherns could greatly increase our chances to get thee ACLU’S HELP,,, I have wrote my own letter of course and send in as much info as I can find on this whole issue,,the deaths it has-willfully caused,,the propaganda,,the suicides all of it..I did this before w/the U.N in Geneva,,and they did write me back,,which is why thee ACLU has agreed to review my case,,,soo please Sir,,if you would be soo kind,,I would be honored if u could write a letter,,in YOUR WORDS,, about this whole mess,,jmo,,act of willfull torture and genocide by a government entity to the medically ill w/painfull medical conditions and denying us timely effective medical care and MEDICINES,, to lessen physical pains,thus causing severe physical pain,,,severe enough to cause some as their only chance to end that severe physical pain WITH-IN THEIR OWN BODIES by choosing death of that body to stop the physical pain,,,,,mary,,,[cmwmkw@gmail.com]

The problem is that heroin & synthetic fentanyl are in this same category called “opiates.” Gee, is a vicodin pill really the same as shooting heroin? They’ve talked about putting those 2 meds in a class by themselves; which desperately needs to be done. I am a chronic pain sufferer with severe conditions. I too, depend on opioids to get through a day. I am responsible with my meds, which have allowed me to have some sort of life. Who are these people commenting about this situation when they know NOTHING about what we’re going through! One lady commented that these people only tried other drugs… Does anyone want to depend on these meds? To have the stigma that goes along with it, the judgement, the ignorance. And now, suddenly they are concerned with the epidemic! Wake up people. Majority of the issues here are street drugs. Where were they 10 years ago when oxycontin was given out like candy? When there were pill farms on every corner in Florida? That was the time for something like this! Now, we are in the midst of a heroin epidemic that’s killing our young adults so we are the ones getting punished? I’ve researched these “guidelines” thoroughly. They aren’t even laws, rather guidelines developed for NEW patients; not long time patients. I’ve argued with my doctor over and over. I cannot function on the drastic cut of medication. And for you judgemental, ignorant people out there, I have tried numerous other alternatives & practice some in addition to the medication. One of my conditions is a form of spina bifida, chiari malformation, which I got from my father’s exposure to agent Orange while in Vietnam. I’ve had numerous unsuccessful brain surgeries and live in constant pain. Yet, I am still optimistic and function despite having daily pain of 6 – 10 on a scale of 1 to 10. I have severe head pain, increased intracranial pressure with nausea, vomiting, neurological problems, speech, balance and cognitive difficulties, etc. Some days, just breathing, swallowing and finding the right words are difficult. Who is the genius behind this idea to punish the responsible, chronically ill people? If they are so smart, why can’t they decipher where the problem really lies! I do believe guidelines are necessary for new opioid prescriptions. Guidelines, not mandatory rules.

56 percent of opioids users stopped using THE drug. Since opioids user start using the ACTIPATCH in the U.K. WHICH WAS MADE IN THE USA LOCATED IN Maryland. I have been using the ActiPatch pain relief device for several years to effectively relieve pain. ActiPatch has been available in the United Kingdom, Canada and Australia for several years, selling in thousands of drug stores such as Boots/Walgreens, Lloyds Pharmacy and Superdrug. The ActiPatch received US FDA Over the Counter Clearance on 2/3/2017 and US stores are now allowed to handle it.

They been cutting me back on my opiate due to this new CDC recommendation. I now live in fear of going to my doctor because of? there cutbacks. I had somewhat of a life before this experiment in terrorism begin, that’s right, (TERRORISM) isn’t that what terrorist do, inflict pain on people for no reason at all. For eight years I took large amounts of opiates, not one time did I ask for more show up late for an appointment, I never had one problem. Now with the cut back on my pain meds, I get to yell at my grandkids, dog and wife, I can’t go out to dinner anymore with my wife, I don’t attend my grandkids ball games anymore, I can’t do light household chores anymore, I don’t go to the store to pick up a few groceries anymore, I’ve become a burden on my family. I now just lay in bed most all day everyday stressed out, I now have anxiety and depression episodes, and am becoming okay with the idea of suicide. I’ll tell you when the time comes I won’t kill myself with drugs because then they’ll just blame the drugs, I’ll get the media somewhere at a hospital, cut my throat bleed all over everything, maybe somebody will pay attention to the problem then but I doubt it, I’ve read so many stories about people suffering and committing suicide cuz of pain. What is the matter with these people? I just wish I knew a way to get everybody organized so that we can get our voices out there. They say there’s other things people can do for pain, well I’ve tried everything I can possibly think of, doctors don’t say s*** least mine haven’t offered any other therapies, even if they did the insurance wouldn’t pay for it anyway. I just spent $3,500 on diode light therapy. I don’t have that kind of money ive been disabled for 10 years I’m on Social Security disability. Good luck to all of you that have to live with chronic pain. Because these terrorists aren’t going to rest until we’re all dead. The doctors don’t care about patience anymore all they’re worried about is keeping their license to practice medicine.

I think it is time for a really big pushback from patients and doctors. It is truly immoral to expect people in pain to suffer if there is a way of relieving that suffering. I am a retired midwife and educator dinally unable to work any longer. I battle pain everyday. I don’t take opiates everyday but. Every single dat starts out with OTC meds. Many days my hydrocodone is not much help. I would like to ask for q higher dosage but I doubt it would ne recieved well and last month I see that the office cut back on the number of pills, for everyone. I got very scared thinking that this could get worse. As it is, I have no quality of life. How much torture are we supposed to live with when there is help? It is time to push back. Not treating pain ahould be malpractice. Living with pain stresses the rest of the body as well.

There are two problems with this notion. First, many of these alternatives are either unproven or outright quackery. Secondly, given the current opiod-hysteria, perpetuating the idea that there are “lots of alternatives” legitimizes not treating pain with drugs that do work.

Based on this response, I am guessing you don’t suffer from chronic, debilitating pain. It is very easy for one to judge & make comments from behind the safety of their computer. Not every condition responds to alternative therapy. This is part of the ignorance I have dealt with the past 10+ years. Perhaps assumptions should not be made publicly without having any facts. Taking a sentence and forming your own (not fact based or supported) judgemental comments may be offensive to some!

I really have TRIED everything else and I was disappointed the meds were my only avenue for relief. Anyone who says there are alternatives needs to try this experiment, Turn on your cook stove to high, When it’s red hot hold your hand on the burner for 30 seconds or 3rd degree burns have taken place, Then go and try some acupuncture and only acupuncture. After 72 hours, Repeat the hand to stove again till that treatment helps you. Then they’ll grasp my life and will be able to speak from experience .

Angel said, “Today I read a study that concluded that patients on long term opioid therapy have higher mortality rates than people not on opioid therapy….obviously people on opioids are suffering disease & disability they’re obviously not even comparable the healthy population. This is what’s passing for science that study was promoted by the NIH & CDC.”

This reminded me of a ridiculous graphic I saw on the NYT website. The gist of the graphic was that workers comp pays less for a patient who is prescribed no opioids, more for a patient who is prescribed a small amount of opioids, and the most for someone who is prescribed months of opioids. SHOCKING NEWS! It’s the opioids fault entirely!!!!! Or maybe, someone with a mild injury is less costly for workers comp, compared to a more serious injury? And a really terrible injury is going to cost the most? Yes, someone at the NYT actually printed that dubious graph as news.

Sorry didn’t include the citation on the harmful effects of pain; Just Google “Harmful Effects of Pain” Several articles will come up including an excellent chart from McCaffery and Paseo’s Pain Assessment and Pharmacological Interventions.